Planet Alzheimer’s

 

images-1How many of you have struggled with Alzheimer’s in a parent or spouse?

I know, from my own journey with my mother, that it can be a horrific experience watching a vibrant and capable human disappear, day by day, before your eyes.

Equally painful is the sense of helplessness … the uncertainty as to how to care for and comfort someone whose emotional and intellectual needs vary from day to day … whose behavior shows no discernible pattern or logic… who “acts out” for no identifiable reason.

Thus, it was reassuring to learn, at a recent seminar in Des Moines as part of the “Embrace Aging” series, that it is possible to make everyday life quite manageable for both dementia victims and their caregivers.

The presenter was Chuck Wurth, a Managing Partner of several retirement communities in the Midwest designed specifically for dementia patients

Living in The Eternal Present

According to Wurth, the loss of memory causes its victims to live in an increasingly eternal present.  As a result, they lose the learned knowledge of cause-and-effect … the memory function that tells us what steps to take to achieve the outcome we want. For example, a dementia patient who is cold may no longer make the connection between getting warm and putting on a sweater or turning up the thermostat.

According to Wurth, dementia patients typically “act out” because they don’t know how to express their needs and/or what to do about it. In his view, meeting the needs of Alzheimer’s patients can be pretty easy … but only if you can figure out what that unmet need actually is.

One approach that Wurth suggested was to take the time … often significant amounts of time … to actually talk to the patient. He offered four checklists—medical, physical, social, and “caregiving”— to prompt specific questions you should to ask in order to discern what the patient needs. “How are you feeling today” just isn’t going to get you the information you need.

Rules of Planet Alzheimer’s

Wurth also believes that the social and caregiving needs of an Alzheimer’s victim are as important as the medical and physical ones: loss of memory does not eradicate the need to be accepted, respected and loved.

Wurth praises the approach developed by Candace Stewart in Welcome to Planet Alzheimer’s.  Stewart uses the metaphor of a different planet, where the language and the rules are different from our everyday world. To communicate with an Alzheimer’s victim, you need to learn their rules:

  • You are not who YOU think you are — you are who THEY think you are
  • Logic and reason do not exist … follow the rules of improvisation and go with the flow
  • Nothing is gained by arguing
  • YOUR truth and THEIR truth are very different … accepting their truth is not the same as lying
  • Never take anything personally
  • Have no expectations
  • Take advantage of the shuttle back to earth at all times … you need to have your needs met as well.

To me, the rules of Planet Alzheimer’s sounded much like interacting with a young child.  According to Wurth, however, you cannot treat dementia  victims like children. They are adults with adult needs, but adults who are have forgotten many of the lessons they once learned.

Wurth insists that caregiving for a friend or family member with dementia can be a rewarding experience—but it takes a very different kind of patience … and a frequent return to the metaphorical planet earth.

If you would like to download Wurth’s four checklists, click here.

Health Care — A Curse or a Cure

 

images-1As recently as 200 years ago, if you stopped breathing, you were considered to have died, whatever the cause. There were few scientifically-based options to prevent or delay death.

A watershed moment in the history of health care came with the invention of the stethoscope in 1816 and the ability to register a heartbeat. But scientifically-based treatment protocols remained out of reach. For the next century, death continued to be, as it had been for much of western history, a part of “God’s plan” or—if you were of an atheistic or pagan persuasion—a matter of fate.

Until 1928, that is, when Alexander Fleming discovered penicillin. For perhaps the first time in history, man no longer had to rely on God or fate to determine the outcome of an injury or an infection. Over the last 90 years, our ability to triumph over illness has expanded exponentially.  Today, we can prevent most infectious diseases (even Ebola, it now seems), repair a faulty heart, excise a malignant tumor, or replace a failing kidney.

For much of the 20th century, medical advances focused on preventing “premature” death from infection or trauma. But these often seemingly miraculous discoveries had unintended consequences.  Most notably, our success in preventing or curing acute illness has led to steadily lengthening life spans, but also a greatly expanded population vulnerable to chronic—and costly—illnesses such as diabetes, COPD, cancer or Alzheimer’s.

Another unintended consequence is that the wonders of modern medicine are increasingly used to “manage” or delay conditions that were once considered normal signs of aging, e.g., sagging skin, declining fertility or loss of muscle tone.  Where is the boundary between preserving a healthy but age appropriate body and defying the natural process of aging? When does the effort to retard aging morph into an outright denial of the inevitability of death?

This urge to deny the inevitable has consequences to be discussed in a later blog, for long term trends in employment and education for our economy as a whole.  More immediately, it is reflected in the frequency with which high cost and often-intrusive medical interventions are employed to keep an aged body alive long after the will to live has gone and all-too-often in violation of the patient’s expressed wishes to be allowed to die.

As many people interpret the Hippocratic Oath (show the “utmost respect for human life”), doctors and hospitals feel they have an ethical obligation to treat your illness if they have the tools to do so. This prescription made perfect sense when there was little the medical profession could do to actually heal an illness or injury, when the role of health care professionals, like their clerical counterparts, was largely to give the patient comfort until God or the fates stepped in.

But what does “utmost respect” mean when science and technology allow the doctor to second-guess God or the fates … to decide, for example, that a failing heart is not a sign of God’s will, but a mechanical problem that should be “fixed” by implanting a pacemaker? Should a pacemaker be implanted in an otherwise healthy 35-year-old father of four? Most of us would instinctively say yes. Should one be implanted in an 85-year-old stroke victim whose mental capacity is permanently impaired? The answer is not so obvious.

These are not new questions, but they take on a new urgency as the baby boomers age. There are not enough health care resources—caregivers and care facilities as well as financial resources—to treat all the “ailments” of the over-65 crowd today, let alone the estimated 90 million elderly that will be clamoring for medical care by 2050.

The issue is not whether we should ration health care … we already do so, based primarily on ability to pay and/or seemingly arbitrary guidelines on what health insurance will cover.  The issue is how should we allocate limited resources in a way that is equitable and fair.

How should we, as a society, decide what kind of health care people should receive, and under what circumstances?  Should the decision be based on spiritual / religious precepts that are often ambiguous and controversial … or on a rational cost-benefit analysis that ignores the question of human dignity and the intrinsic value of life?  Who should make that decision?

What would you do?

Health Care and You

 

 

images-1Greetings!  I have returned after an extended and not-entirely intentional absence from the world of blogging. A significant factor has been the time required to prepare for a university level course, entitled “Comparative Religion,” that I began co-teaching as of September, 2015.

Readers of my blog could be forgiven for asking what qualifies me—a confirmed agnostic and an ex-Wall Street maven—to teach a course on religion. The answer is that a key element of the course is the recurring collision between modern health care and many religious traditions. My contribution is less on theology and more on bioethics—the many different ways in which religious beliefs affect health care, and particularly people’s end-of-life decisions.

As I noted in a blog last November, my interest in bioethics and health care was provoked by the prolonged and painful deaths suffered by both of my parents.  My father, bedridden with the complications of diabetes at age 54, repeatedly asked to be allowed to die. Sadly, four of the five time his heart failed, his doctor took extraordinary measures to get it pumping again. Even as a devout Catholic, he had the moral right to be allowed to die a year earlier, but he did not have the stamina to overcome his doctor’s refusal to let nature take its course.

By contrast, my mother romped through eight decades with élan. At age 70, while still of sound mind, she handed my brother and me detailed instructions from the Hemlock Society (now Compassion & Choices) for facilitating her death if she was no longer able to manage day-to-day life on her own.  Her advance directive, however, contemplated a stroke or terminal cancer rather than dementia. When Alzheimer’s unexpectedly stole away both her mental and physical capacities, there was little we could do.  No longer of sound mind, she did not meet the requirements for physician-assisted suicide in even the most liberal of states.

In my blog last fall, I initiated a discussion of several health care themes that seemed particularly relevant to the baby boom generation. Going forward, my focus will be broader, to include a host of issues that fall under the general heading of bioethics, and address health care issues faced by all age groups. Health care issues to be explored include the challenges posed by modern drugs and medical technology, as well as the challenges that many religious traditions face in this environment and the insights that they still have to offer.

Early health care topics will include:

  • How did we get to a place where aging has become a disease, something to be repaired and reversed … a place where we no longer seem to know what it means to let nature take its course?
  • Should health care be a universal right … and if so, what kind of health care?  If not, what criteria do we as a society use to decide what health care is necessary and appropriate?
  • Who should decide what kind of medical care we receive … whether to initiate or terminate treatment … based on what criteria?
  • What are your rights when medical treatment is deemed futile?  Can you … should you … override your doctor’s recommendation?  If so, under what circumstances.
  • What are the economic, financial and/or legal implications of the medical choices many of us will have to face … for ourselves and our families … for society as a whole?
  • Is there a “right to die” at a time and under conditions of our own choosing?  If so, does that imply a right to commit suicide … to have someone assist us with suicide?
  • What are the ethical implications of clinical research trials?
  • What are the pros and cons of “controversial” medical procedures: physician assisted suicide … clinical trials for new drugs and treatments … stem cell research … in vitro fertilization … organ transplants … designer babies?

As in the past, my goal is not to promote a particular point of view, but to prompt a vigorous discussion of the complex issues facing us all … not just the aging baby boomers, but the generations who come behind us, and must live with the consequences of the decisions we make—or perhaps even worse, the decisions we don’t make.

I hope you will join me — and bring your friends — on this journey.

Death and the Meaning of Life

 

“Each day, we wake slightly altered, and the person we were yesterday is dead. So why, one could say, be afraid of death, when death comes all the time?”      ~  John Updike

“To the wise advice that we live every day as though it will be our last, we do well to add the admonition to live every day as though we will be on this earth forever.”  ~ Sherwin Nuland

 

the meaning of deathAs I delve more and more into the medical and ethical issues of aging, I find repeated references to the tendency in modern society—and particularly America—to avoid the subject of death. I plan, over the next few months, to explore some of the social and cultural reasons for this pattern, but today’s blog is a personal muse on why death—the very fact of death—gives added and richer meaning to life and to the opportunities that await us.

Long-time readers of my blog (or readers of Sailing Down the Moonbeam) will know that a watershed event in my life occurred on a 35-foot sailboat in the middle of the Pacific Ocean. After a week of sunny days with calm seas and a cloudless sky, a companion sailboat, aptly named Pacific, missed the scheduled meet-up on ham radio. Initially, no one seemed worried, as the yacht’s absence was easily explained by battery troubles or a broken radio antenna, either of which might take a day to fix.  No one saw any reason to call for help.

I did not view their absence with such equanimity.  What if it wasn’t a mechanical problem? What if Pacific had collided with a whale or a submerged container that fallen off a freighter, and the crew was drifting in a lifeboat? We were well outside the shipping lanes.  The odds of finding a small lifeboat floating in an unknown direction from an unknown starting point were almost nil.

When Pacific did not reappear on the second day—and still no one suggested calling for help—panic struck. From the beginning of our sailing voyage, I assumed that if we had a major problem, someone would come to our rescue, much as I had always assumed that an ambulance would appear if I had an accident on a New York highway.  Suddenly, I came face to face with the imminence of death, with the very real possibility that my life could come to an abrupt end on sunny day in a calm sea.

The watershed moment did not occur that day. Rather it came several days later, when I realized that imminent death had always been a possibility—that my faith in the appearance of the ambulance on the highway was as illusory as my belief in help at sea.

Once I accepted that the fact that my being was out of my control, I wanted to use my time and energy for things that mattered to me … to seize every opportunity …. to make sure I used every moment of my existence as if it were my last.

I wish I could say that I have always been true to this philosophy. What I can say is that the awareness of the fragility of life has been a constant reminder that I should not fall prey to what society thinks is important.  Since every moment could be my last—I could die before I even finish this sentence—every new moment is a new opportunity to live my life better and more wisely.

This muse was prompted, in part, by my interest in the subject of aging and death.  It was also prompted by a recent philosophy class in which we studied the often-controversial German philosopher Martin Heidegger.  At the risk of oversimplification, Heidegger sees much of our everyday existence as “falling prey” to the social, religious and cultural mores imposed by those around us, as well as the generations that have lived before us. Even those who see themselves as rebels or revolutionaries or free-thinkers are doing little more than re-arranging the ideas and concepts handed out by others.

For Heidegger, the only escape from this “inauthentic” existence is death … not the actual death that terminates human life, but the possibility of imminent death. For Heidegger, the ever-present possibility that this moment will be my last also offers a perpetually renewing opportunity to live in a way that is meaningful to me.

Does the possibility of death add meaning—and opportunity—to your life?